Misdiagnosis

Not a mis-diagnosis, just miscommunication; my optician, at my eye test, referred me to the Out patients at our Eye Hospital. I was there most of the day, and was examined by 3 different doctors. The second doctor said I'd need an injection in the eye; I was then seen by a consultant, who said they'd just see me again in 4 months.
The next day I was phoned by someone to make an appointment for the injection! I suggested she spoke to the consultant who had said I didn't need it, and I never heard any more about it.
If I'd been less assertive, or hadn't been listening properly to the consultant, I could have had an injection I didn't need.

All my children (and their cousins) are what are known as Zebras. It means that when the Dr's view them, they see them are horses which is the way they are trained but in fact, they have more complex problems which are often not seen if you are seeing a horse rather than a Zebra. This has meant that they have been misdiagnosed quite often. It has taken years of fighting to get a proper diagnosis and, even then, it is a fight to get the proper treatment for the comorbidities they face. For example, traditional physiotherapy can be more harmful as it can damage their joints further causing early onset arthritis. My daughter was told that the way she stands is what causes her pain and she should stand up straight. An MRI (which we fought tooth and nail for) shows she has scoliosis, a prolapsed disc (completely impossible according to the Physio) and arthritis in her sacroiliac joint (doesn't move unless you have been in a car crash). All of these things are quite normal with a person with her condition. My son was 17 when his first disc prolapsed, I was 14. We are Zebras not horses!

I seem to remember you having asthma at school. Was that the precursor to this?

I was diagnosed with asthma due to a continuous cough and wheezy chest.

It was a lazy decision as far as I was concerned - I never thought it was asthma - I've grown up in a household with several asthmatics so I know the symptoms better than most.

I went to a different GP as the cough was no better and I told him that I did not think I had asthma. He sent me for a 'Mannitol Challenge' test which is quite unpleasant but you get a definitive answer straight away.

So, no I don't have asthma but since I have refused the Flu Jab I no longer have the continuous cough through the winter either.

I was told by my family GP following a chest X-ray that I had something seriously wrong and we all know what that means. He arranged a mammogram which turned out clear.
He then sent me for another X-ray and a scan which also showed no results and I was given the all clear but still felt short of breath.
2 weeks later I had a huge pulmonary embolism.
The Dr must have been having an off day!
Needless to say that was last December just before the virus. If it had happened a few months later I expect I would still be waiting for the initial X-ray.

42 years ago, I was suffering from excessive bleeding and went to see my ageing, male GP. 'It's your age, Mrs X', he explained. I was 37!. A few months later, we had moved and I consulted my new GP who quickly discovered that the culprit was my IUD (coil) which had malfunctioned. Coil removed, I was back to normal immediately.

Doctors do make mistakes, in 2000, I noticed a really black, tiny mole that was driving me potty with itchiness. I told the doctor at my next appointment, he had a quick look and said it was nothing to worry about. I showed him the same, slightly larger mole 6 months later, he again told me that as we get older we do get more moles. 6 months later I saw a locum. He took one look and phoned the local dermatology department. I was seen for an excision the same day, and had surgery a week later to remove a stage 3 melanoma, the excision required a skin graft, and 6 months of oral chemotherapy.

The GP was devastated when he heard about it and very apologetic. He also went to the skin department and underwent further training.

My DH had bowel cancer. Surgery and chemo, good result. 6 years later he was in agony and passing what could only be described as being the colour of best burgundy. A & E found and treated an infection but Dr mentioned with DHs history situation should be monitored. Even with my little knowledge of the male urinary tract I knew an infection was unusual. No follow up from GP. Only when two years later the night time visits to the loo started did GP test for prostate cancer. Surgery required. He has had 14 years but mow on anti cancer drugs as cancer has metastasised. I am convinced if checks had been made following A & E visit he would have been totally cleared.

I had a thunderclap headache (the feeling of being hit with a 2 by 4) on the Tuesday. Got off a bus on Friday and couldn't walk straight, felt sick, and didn't feel like I was thinking coherently. Went to my GP, and saw a locum to the practice. He checked me out, spoke with a neurologist, and told me to go to hospital, to the GP Assessment unit. (Every journey an hour on the bus.) Was eventually seen, and doctor sent me for a CT scan, and admitted me. Lumbar puncture next day, MRI 5 days later. All told 10 days in hospital to be told that it was because of my blood pressure improving, so I needed to stop taking the medication. Episodes of dizzy, lightheadedness continued for years. Had tests for Meniers disease (which are unpleasant) and so forth. Finally saw a consultant who decided that I had vestibular migraines (little or no pain, just the other symptoms) so needed to avoid certain food triggers! Grand total of 9 years, and countless tests, not to mention NHS time and money.

After having a permanent cough for 5 years I kept asking for a referral but ended up with a prescription for antibiotics which helped for 2 weeks then back to coughing. Eventually barely breathing I staggered to the surgery and told them I must be referred to the respiratory clinic. The doc looked up from his desk and asked, 'Would you like an appointment in two weeks or go to the hospital now?' I said "Now, please". I was kept in for a week while they diagnosed I had TB!! I am now clear of TB but have been left with Bronchiactasis!!

After getting out of breath when walking up hill etc, was diagnosed with asthma in my fifties and was treated with inhalers etc and continued like that for a couple of years with no improvement in my breathlessness. I then had to go in hospital for day surgery for another condition and they were concerned that I wasn’t breathing properly during the operation, they kept me in and did further tests, they found that I had a tumour that was so large it was laying on my lung and my lung had collapsed hence the breathlessness, I was lucky it was found removed and I made a full recovery, pity the GP didn’t send me for a chest X-ray I could have been treated sooner.

I had a major back surgery in 2000 and the consultant put me on HRT to strengthen my bones after the op even though I was too young to be going through the menopause. This consequently caused fibroids and other women problems’ which became so severe I ended up having an emergency hysterectomy. For 2 years I became so unwell after that in the end I knew I was actually dying, I was admitted to hospital and given steroid facet joint injections, but told all my severe symptoms were ‘the menopause’ even though most painful back pain you can imagine, I knew the doctors were talking rubbish but couldn’t get anywhere with any of them, it was impossible, I told my stupid GP I had at the time That I thought I had spinal infections, he replied by saying there’s no such thing! Consequently my mother begged me to see her new GP because I was so ill so I gave her address and signed on with them. I went for the new patient check up with the nurse one morning and she asked why the sweat was running off me, I explained I felt so ill and I knew I was dying but nobody believed me, she promptly called a lovely lady doctor in who looked at my back and said I’d got an abscess on it but she could tell it was more serious than that and she was calling an ambulance, I was admitted straight to hospital, long story short, I had 3 big spinal infections with numerous bits and bobs of bacteria as well, all my metal was loose due to the bugs in the metal in my back, consequently another 8 hour operation and I was in hospital for over 3 months on IV antibiotics and 6 years after on oral antibiotics which have knocked my immune system out and caused lots of health problem. All the infections caught during the hysterectomy. I tried sueing the hospital etc but it was stressful, it cost me £8k and they stuck together like a can of worms to get out of paying up even though they ruined my life and yet Leslie Ash got just 1 of the spinal infections I contracted and sued and got a million Pounds or so!

Hi Nankate, well what a huge worry for you and for so many years.

But isn't it interesting, just how many replies your story has prompted re wrong diagnoses!

I have the same type of story. After 22 years, I finally got a diagnosis of PPMS. There was a wrong one in among.

If it hadn't been for my daughter changing jobs and working for a great neurologist, I would never have got diagnosed.

I hope you are as well as you can be.

Take care xxx

My DD was told her pain and disability (she could hardly walk) were down to stress. She got a second opinion and stress was diagnosed again. Eventually she saw a retired doctor who was an old family friend and he said she had kidney disease. He was right and within days she had recovered.

I have a friend who is a GP. She's told me that she worries constantly that she might have made a wrong diagnosis. With a new patient every 10 minutes I'm not surprised that sometimes doctors get things wrong.
I remember going on holiday once when my GP Dad suddenly said 'Oh my God its Guillain Barre syndrome,' turned the car back and drove back home to arrange an assessment for a patient whose symptoms he'd been worrying about. Turned out he was right and the patient made a good recovery in the end.
Doctors are human too and there are so many many things that can go wrong with the human body.

I find threads like this quite troubling from two viewpoints.

The first is the worry that so many mistakes are made by doctors but, as Barrygirl said, they are not magicians. They can only gather up the symptoms with which they are presented and make a judgement. Sometimes the judgement is wrong. No doubt there are doctors who are not good at their jobs and as an ex ward sister of many years, I can testify to that. I can also testify that the majority of them are doing their level best to do the job, for which they trained, efficiently.

The second viewpoint is simply that, when mistakes are made, the stories are given so much publicity that the huge percentage of successful diagnoses and treatments tend to get lost. I wonder how many people would contribute to a thread about successful outcomes.

For those of you who have told of poor/misdiagnoses, please don’t take this as criticism. It is human nature for bad things to be remembered and good ones to be forgotten.

Jane10 Exactly

BlueDaisy that is horrific! I am so so sorry that the lawyers couldn't do anything - my issues began with a misdiagnosis from a Gynaecologist initially - I knew MY body better than they did and I was telling them something that they should have listened to but didn't bother - I now have multiple chronic health issues and have been unable to work for over a decade now due to disability .... I am one of those living the life of Riley on disability benefits - such a wonderful life that I am having to sell the roof over my head

All these stories in a pretty small representation of the General Public but of a certain age presumably, are very worrying indeed!

As a percentage of all NHS patients its a microscopic number who are misdiagnosed. Being human, we only only remember or report which diagnoses are wrong.

I was out in BP medication as my BP showed high st the time. Was never monitored over the years was feeling very poorly with breathing problems and Dr suggested it might be the BP tablets Nd to come off them - ever since I came off them my BP has bee n perfect - I could have still been taking them

A dear friend had a growth on his eyebrow that was getting bigger. One of the GPS at his practice told him it was ‘nothing to worry about’. He died a year later from secondaries when this merkel cell carcinoma metastasised.

Thank goodness for your post Tweedle24

I agree Jane10, it is human to remember adversity. I've read the posts on this thread and some of you have had horrible experiences. When things go wrong, beit misdiagnosis, unwarranted treatment or problems resulting from surgical procedures and it happens to you or the ones you love it is traumatic.

I've experienced good and bad from the NHS. I've had liver function impairment due to medication I was prescribed. I've had kidney stones and 5 operations as a result, also due to medication and I went 10 years with a misdiagnosis by not one but several consultants. There's more but I'll leave that aside.

Were the Drs wrong when they prescribed me the medication that they did? No, they were endeavouring to treat me.
Is there any fault to lay at the door of the NHS or any consultant because I had such awful side effects? No, no medication is perfect. One person can be prone to issues but another will have very trivial or no side effects.

Could I have had the correct diagnosis sooner? Yes. Was my misdiagnosis simply a matter of it being a greater likelihood than my correct diagnosis? No. Was it a reasonable diagnosis to make? No. Could any of the consultants made a different diagnosis? Yes. Can any "blame" be attributed at any consultant's door? Yes. Does that mean that each one is therefore to blame? No. Do I feel wronged? Yes. Why? There was clear empirical evidence disregarded. If there had not been any would I feel wronged? No. Why? Without proof a diagnosis is just that via gnosis. No matter how skilled and knowledgeable in the end every Dr has the same gnosis as you or me.

When my son was 8, he had terrible ear ache. Went to the GP who said it was gromits and had to be operated on. We had to use the cover under our private health care scheme, as the hospital wait was months at that time and he was in so much discomfort. They saw us really quickly, gowned him up, anaesthetised him and operated on him. I even stayed the night with him as he was young and had to recover from the anaesthetic. The surgeon afterwards sheepishly admitted to me that it was a large ball of ear wax that was causing the problem, not gromits. I think both the gp and the doctor were at fault there for not spotting that and I still get annoyed thinking about how he had to endure a full operation, purely for ear wax.

Gromits are tiny tube that are inserted into the ear to allow fluid to drain. They aren't things that grow there! Perhaps the surgeon was going to insert them? My DS had recurring ear infections when he was little and had to have Gromits fitted. One eventually fell out. It was a tiny little blue tube.